Monday, June 2, 2008

I slept a fair bit last night getting up to pump and having some success, more and more colostrum with less trouble. Leftie is still lagging a little, but she's not out of the race.

When I called to check on Robbie at 4am (we're encouraged to visit or call at any time, day or night) his nurse told me that they'd decided not to try to pull him off the vent today. They'd tried a little bit different air therapy with him and he wasn 't pleased and since they had just put him back on the vent yesterday, they decided to let him rest a bit before trying something else.

His Biliruben is down, which is good. His sodium was up, they suspected he was a little bit dehydrated and were going to adjust his fluids.

They plan an echo to look at his heart for tomorrow. They don't suspect any heart problems at all, but they are very, very, very common in babies his size, so they want to be sure.

All in all, it was good news.

After that, I got my epi & IVs out. This meant I could SHOWER. Something I hadn't done since Wednesday. Even Thursday morning, I had simply thrown on some old clothes and put my hair up when heading to the doctor. I was only planning on getting some antacids and going home, if you'll recall.

After washing off what felt to be 200 pounds of sweat & grime, I felt like a new women. Both David and a friend who visited briefly this morning commented on how much better I looked.. Not just cleaner, but just... healthier, I guess.

The hospital called and asked that I make some arrangements to have Robbie added to my health insurance, so I set about doing that. It shouldn't have been complicated but of course, I couldn't remember my password to access my benefits from home. I normally do it all from work.

I had to say a couple of times "I need to find out about adding a dependent" to different people and by the time it was done, I was saying "I'm calling to add my newborn son to my insurance." After about 13 phone calls, it was finally done. I officially have a dependent son. Woah. That felt weird. In a completely freaking awesome way, of course.

After business was done, I pumped one last time while David showered and then we planned to head down to the NICU to visit.

My tech came in to get my vitals and gave me a bit of a lecture about sleeping more, getting off my feet etc. My blood pressure is still ugly. The doctor started me on anti-hypertensives this morning, but they hadn't started just yet. I promised to stay in the wheelchair down to and into the NICU.

I was nervous. It's so hard for me to see him so fragile and helpless. There are alarms everywhere and they're super sensitive and go off a lot, which makes me nervous. The nurses and doctors have been fantastic every time we have been there. Explaining each alarm, why it's happening, what it means. What the tubes are.. how he's changed.

Today was no different. Or perhaps it was, but better. The doctor came to speak to us. What an incredibly calming influence he is. He was very positive. Explained things in great detail. Encouraged us a lot. He told us that Robbie is doing exceptionally well. He explained that there will very likely be things that will frustrate us- infections etc.. but that with the start he has, there is no reason to believe he won't make it. He did say that sometimes a baby doing really well can just falter unexpectedly, but it was rare.

He said our Robbie has a long way to go, of course. Because he's so incredibly early, it's more likely that it'll be closer and closer to his due date before he might get to come home. If he'd been born at 33w, for exacmple, he might get to go home closer to 35 or 36, but because Robbie is so small, he'll take more time to catch up.

He asked about a pediatrition and we both looked sheepish. Again with the answer "We thought we had more time." I asked if he recommended anyone. I expected him to give us a list of associated physicians. Instead, he suggested we contact the social worker with the hospital and have her get us a list of peds who are associated both with our insurance & the hospital and bring it to him. Then he'd give a recommendation.

I was impressed. He clearly was out to help. Like everyone else, he encouraged us to ask questions of anyone and if ever we were confused or scared to be sure to ask for him or one of the doctors who is always there. Never feel like a bother.

I also got the opportunity to feel really proud for a minute. Before we went to the NICU, I gathered up my bottles of pumped goodness from the fridge. the nurse on the phone had said they weren't going to feed him until at least tomorrow. But when the doctor saw how much colostrum I had collected, he told the nurse to go ahead and start. They didn't think he was ready to tolerate formula yet and were waiting for enough breast milk to be able to feed him.

I had enough in one bottle to supply for today. He praised me and I beamed. Finally. FINALLY. FINALLY my body does some good. he talked a bit about the benefits of breast milk, particularly for preemies.

He was a lovely man, really. We chatted a little bit about CPAP. It seems he has sleep apnea and his wife wants him to get a machine. David has one.. and of course, little Robbie was on CPAP the other day when he was off the vent. The doctor asked David about his experiences with it. An exchange of information. Good to be of help to them, too..

We stayed a while and just watched him sleep. When we had arrived he was getting all his tubes flushed and changed, his diaper changed (though he fought that quite thoroughly) and he got repositioned. But now he was comfortable, sort of half on his side, looking chilled out with his sunshade and Star Trek lighting.

Then we left. We agreed that if we hit the lottery, the people running the NICU are getting something. I suggested a vacation for all of them but David leans more to the useful and we'd donate a bunch of money for improvements so they can help more people.

Truly, when leaving the NICU, I feel like I'm leaving the company of angels. There's so much goodness in such a little place. It's truly amazing.

Now I'm back to my room and need a nap. I did promise to take it easier today to try to get my BP back down. So I will keep my promise.

I've gotten all of your emails & messages and will be responding ASAP. Thank you so much for your stories and support. More company of angels..

20 comments:

Trish, it is so wonderful to hear how much you like your team of drs and nurses. I'm sure that makes all the difference in the world to helping you get through this. It's amazing to know Robbie is in such good care!

I remember how incredibly excited I was when pumping began to yield something... that colostrum truly felt like liquid gold. It made me feel like there was one thing that only I could give to my girls, in and amongst all of the doctors and nurses. I'm glad it's starting to work for you and that he gets to EAT!

I doubt if you remember me... I was on SAL for awhile... but I have been monitoring your family closely since Saturday. I am so happy to see things working out. I wish you and your family all the best. ~Minnteacher

I am so thrilled to hear he is doing so well! I am still sending tons of prayers your way. I'm glad to hear you are feeling a little better too. Keep taking care of yourself and make that BP go down. It sounds like the staff are really great too, it makes such a difference in things.

What a wonderful feeling to know that your little one is in such good hands!! I'm praying that litle Robbie will continue to gain stregnth. I know you all have a long road, but please know that you all are continually being lifted up in prayer!!!

Trish, I thought of you yesterday as I attended the graduation party of one of my senior girls who herself was born at 26 weeks a little over 18 years ago. She is a beautiful, healthy 18-year-old who is going to college in the fall. I continue to pray for you, Dave, and sweet little Robbie.

I'm just in tears reading this update. I couldn't be more thrilled that things have been relatively uncomplicated thus far and that you're more comfortable in the NICU. I'm still thinking of you all and will continue to do so.

Hooray for Dr. Neonate! It's so nice to have someone on your side who is a real human that cares and genuinely wants to help. NICU docs and nurses have a special place reserved in heaven.

Every post I read makes my heart fill. Through your writing, I have only a minute sense of what your experience might be. I'm sure it's an exciting, scary, emotional, helpless, hopeful, confusing & overwhelming time. You know I had to include overwhelming. :)

Just know that there are unknown numbers of people praying for you, David, Robbie (your SON!), and all the hospital staff. Hopefully He will continue to hear and provide according to our prayers. Please let us know any specific requests you have & we will pray some more!

Coming over from lost and found. I'm glad that Robbie is doing well and hope that he continues to do so and that the lows that come with the journey aren't too bad, pass quickly and are few and far between. Also it helps that the staff and docs are so good. I've never had a NICU baby but worked NICU briefly a little over a year ago and those nurses and docs are amazing. My thoughts to you and your family for calm in the coming days and weeks.